Migraine-attributed burden, impact and disability, and migraine-impacted quality of life: Expert consensus on definitions from a Delphi process
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Background: Migraine-attributed burden, impact, disability and migraine-impacted quality of life are important concepts in clinical management, clinical and epidemiological research, and health policy, requiring clear and agreed definitions. We aimed to formulate concise and precise definitions of these concepts by expert consensus. Methods: We searched the terms migraine-attributed burden, impact, disability and migraine-impacted quality of life in Embase and Medline from 1974 and 1946 respectively. We followed a Delphi process to reach consensus on definitions. Results: We found widespread conflation of concepts and inconsistent terminology within publications. Following three Delphi rounds, we defined migraine-attributed burden as “the summation of all negative consequences of the disease or its diagnosis”; migraine-attributed impact as “the effect of the disease, or its diagnosis, on a specified aspect of life, health or wellbeing”; migraine-attributed disability as “physical, cognitive and mental incapacities imposed by the disease”; and migraine-impacted quality of life as “the subjective assessment by a person with the disease of their general wellbeing, position and prospects in life”. We complemented each definition with a detailed description. Conclusion: These definitions and descriptions should foster consistency and encourage more appropriate use of currently available quantifying instruments and aid the future development of others.
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The physical, social, and mental burden of headaches is substantial.
“The physical, social, and mental burden of headaches, defined as the summation of all negative consequences [3], is substantial.”
From Development and Evaluation of a Smartphone-Based Chatbot Coach to Facilitate a Balanced Lifestyle in Individuals With Headaches (BalanceUP App): Randomized Controlled Trial (2024) · cites this paper as [3]
The Results (Table 1) define migraine-attributed burden as the summation of all negative consequences of the disease or its diagnosis, directly supporting the cited definition. The source addresses migraine specifically, however, rather than establishing the substantial physical, social, and mental burden of headaches generally. (LLM, conf=0.82)
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James, S. L., Abate, D., Abate, K. H., Abay, S. M., Abbafati, C., Abbasi, N., Abbastabar, H., Abd-Allah, F., Abdela, J., Abdelalim, A., et al. (2018) · The Lancet · doi:10.1016/s0140-6736(18)32279-7 · Cited by 13,867 · see citing works
Self-citationVos, T., Abajobir, A. A., Abate, K. H., Abbafati, C., Abbas, K. M., Abd-Allah, F., Abdulkader, R. S., Abdulle, A. M., Abebo, T. A., Abera, S. F., et al. (2017) · The Lancet · doi:10.1016/s0140-6736(17)32154-2 · Cited by 13,220 · see citing works
Self-citationDiamond, I. R., Grant, R. C., Feldman, B. M., Pencharz, P. B., Ling, S. C., Moore, A. M., & Wales, P. W. (2014) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2013.12.002 · Cited by 3,740 · see citing works
GBD 2010: design, definitions, and metrics
Murray, C. J., Ezzati, M., Flaxman, A. D., Lim, S., Lozano, R., Michaud, C., Naghavi, M., Salomon, J. A., Shibuya, K., Vos, T., et al. (2012) · The Lancet · doi:10.1016/s0140-6736(12)61899-6 · Cited by 1,103 · cited 2× · see citing works
“YLDs better reflect lost health due to disease (12), which may indeed approximate to the concept of burden of disease, but the latter is a much more complex construct than disability, and certainly not synonymous with it.”
BackgroundHeadache, O. B. O. L. T. B. T. G. C. A., Steiner, T. J., Stovner, L. J., Jensen, R., Uludüz, D., & Katsarava, Z. (2020) · The Journal of Headache and Pain · doi:10.1186/s10194-020-01208-0 · Cited by 1,049 · see citing works
Self-citationAn experimental study of group opinion
Dalkey, N. C. (1969) · Futures · doi:10.1016/s0016-3287(69)80025-x · Cited by 773 · see citing works
Burch, R. C., Buse, D. C., & Lipton, R. B. (2019) · Neurologic Clinics · doi:10.1016/j.ncl.2019.06.001 · Cited by 741 · see citing works
Migraine is first cause of disability in under 50s: will health politicians now take notice?
Steiner, T. J., Stovner, L. J., Vos, T., Jensen, R., & Katsarava, Z. (2018) · The Journal of Headache and Pain · doi:10.1186/s10194-018-0846-2 · Cited by 642 · see citing works
Self-citationA Delphi study to build consensus on the definition and use of big data in obesity research
Vogel, C., Zwolinsky, S., Griffiths, C., Hobbs, M., Henderson, E. J., & Wilkins, E. L. (2019) · International Journal of Obesity · doi:10.1038/s41366-018-0313-9 · Cited by 452 · see citing works
Woldeamanuel, Y. W., & Cowan, R. P. (2016) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2016.11.071 · Cited by 426 · see citing works
Leonardi, M., Steiner, T., Scher, I., & Lipton, R. B. (2005) · The Journal of Headache and Pain · doi:10.1007/s10194-005-0252-4 · Cited by 417 · see citing works
Self-citationSmitherman, T. A., Burch, R. C., Sheikh, H. U., & Loder, E. (2013) · Headache The Journal of Head and Face Pain · doi:10.1111/head.12074 · Cited by 386 · see citing works
The impact of headache in Europe: principal results of the Eurolight project
Steiner, T. J., Stovner, L. J., Katsarava, Z., Lainez, J. M., Lampl, C., Lantéri-Minet, M., Rastenyte, D., Ruiz de la Torre, E., Tassorelli, C., Barré, J., et al. (2014) · The Journal of Headache and Pain · doi:10.1186/1129-2377-15-31 · Cited by 382 · see citing works
Self-citationMigraine: the seventh disabler
Steiner, T. J., Stovner, L. J., & Birbeck, G. L. (2013) · The Journal of Headache and Pain · doi:10.1186/1129-2377-14-1 · Cited by 335 · see citing works
Self-citationSteiner, T. J., & Saylor, D. R. (2018) · Seminars in Neurology · doi:10.1055/s-0038-1646946 · Cited by 330 · see citing works
Self-citationBuse, D. C., Rupnow, M. F. T., & Lipton, R. B. (2009) · Mayo Clinic Proceedings · doi:10.1016/s0025-6196(11)60561-2 · Cited by 318 · see citing works
Buse, D. C., Fanning, K. M., Reed, M. L., Murray, S., Dumas, P. K., Adams, A. M., & Lipton, R. B. (2019) · Headache The Journal of Head and Face Pain · doi:10.1111/head.13613 · Cited by 314 · see citing works
Adams, A. M., Serrano, D., Buse, D. C., Reed, M. L., Marske, V., Fanning, K. M., & Lipton, R. B. (2015) · Cephalalgia · doi:10.1177/0333102414552532 · Cited by 305 · see citing works
Lantéri-Minet, M., Duru, G., Mudge, M., & Cottrell, S. (2011) · Cephalalgia · doi:10.1177/0333102411398400 · Cited by 303 · see citing works
A narrative review on the burden of migraine: when the burden is the impact on people’s life
Leonardi, M., & Raggi, A. (2019) · The Journal of Headache and Pain · doi:10.1186/s10194-019-0993-0 · Cited by 292 · see citing works
GBD 2015: migraine is the third cause of disability in under 50s
Steiner, T. J., Stovner, L. J., & Vos, T. (2016) · The Journal of Headache and Pain · doi:10.1186/s10194-016-0699-5 · Cited by 267 · see citing works
Self-citationChronic Migraine: Epidemiology and Disease Burden
Manack, A. N., Buse, D. C., & Lipton, R. B. (2011) · Current Pain and Headache Reports · doi:10.1007/s11916-010-0157-z · Cited by 230 · see citing works
Steiner, T. J., Gururaj, G., Andrée, C., Katsarava, Z., Ayzenberg, I., Yu, S.-Y., Al Jumah, M., Tekle-Haimanot, R., Birbeck, G. L., Herekar, A., et al. (2014) · The Journal of Headache and Pain · doi:10.1186/1129-2377-15-3 · Cited by 204 · see citing works
Self-citationStovner, L. J., Al Jumah, M., Birbeck, G. L., Gururaj, G., Jensen, R., Katsarava, Z., Queiroz, L. P., Scher, A. I., Tekle-Haimanot, R., Wang, S.-J., et al. (2014) · The Journal of Headache and Pain · doi:10.1186/1129-2377-15-5 · Cited by 203 · see citing works
Self-citationLipton, R. B., Adams, A. M., Buse, D. C., Fanning, K. M., & Reed, M. L. (2016) · Headache The Journal of Head and Face Pain · doi:10.1111/head.12878 · Cited by 194 · see citing works
Migraine Burden of Disease: From the Patient's Experience to a Socio‐Economic View
Agosti, R. M. (2018) · Headache The Journal of Head and Face Pain · doi:10.1111/head.13301 · Cited by 180 · see citing works
Lifting The Burden: The Global Campaign to Reduce the Burden of Headache Worldwide
Steiner, T. (2005) · The Journal of Headache and Pain · doi:10.1007/s10194-005-0241-7 · Cited by 172 · see citing works
Self-citationTakeshima, T., Wan, Q., Zhang, Y., Komori, M., Stretton, S., Rajan, N., Treuer, T., & Ueda, K. (2019) · The Journal of Headache and Pain · doi:10.1186/s10194-019-1062-4 · Cited by 164 · see citing works
Epidemiology and Economic Impact of Migraine
Lipton, R. B., Stewart, W. F., & Scher, I. (2001) · Current Medical Research and Opinion · doi:10.1185/0300799039117005 · Cited by 131 · see citing works
The epidemiology and impact of migraine
BIGAL, M. E., Lipton, R. B., & Stewart, W. F. (2004) · Current Neurology and Neuroscience Reports · doi:10.1007/s11910-004-0022-8 · Cited by 117 · see citing works
Burton, W. N., Landy, S. H., Downs, K. E., et al. (2009) · Mayo Clinic Proceedings · doi:10.1016/s0025-6196(11)60562-4 · Cited by 106 · see citing works
Loder, S., Sheikh, H. U., & Loder, E. (2015) · Headache The Journal of Head and Face Pain · doi:10.1111/head.12506 · Cited by 105 · see citing works
The Migraine Cycle: Patient Burden of Migraine During and Between Migraine Attacks
Brandes, J. L. (2007) · Headache The Journal of Head and Face Pain · doi:10.1111/j.1526-4610.2007.01004.x · Cited by 94 · see citing works
Assessing the Impact of Migraine
Dowson, A. J. (2001) · Current Medical Research and Opinion · doi:10.1185/030079901753403207 · Cited by 84 · see citing works
Burden of migraine: international perspectives
Leonardi, M., & Raggi, A. (2013) · Neurological Sciences · doi:10.1007/s10072-013-1387-8 · Cited by 83 · see citing works
Lifting The Burden: the first 7 years
Steiner, T. J., Birbeck, G. L., Jensen, R., Katsarava, Z., Martelletti, P., & Stovner, L. J. (2010) · The Journal of Headache and Pain · doi:10.1007/s10194-010-0264-6 · Cited by 80 · see citing works
Self-citationIntegrated care for chronic migraine patients: epidemiology, burden, diagnosis and treatment options
Diener, H., Solbach, K., Holle, D., & Gaul, C. (2015) · Clinical Medicine · doi:10.7861/clinmedicine.15-4-344 · Cited by 80 · see citing works
The burden of migraine to the individual suffer: a review
Dahlöf, C. G. H., & Solomon, G. D. (1998) · European Journal of Neurology · doi:10.1046/j.1468-1331.1998.560525.x · Cited by 73 · see citing works
Migraine diagnosis: Screening items, instruments, and scales
Peng, K.-P., & Wang, S.-J. (2012) · Acta Anaesthesiologica Taiwanica · doi:10.1016/j.aat.2012.05.002 · Cited by 59 · see citing works
Stang, P., Cady, R. K., Batenhorst, A. S., & Hoffman, L. H. (2001) · PharmacoEconomics · doi:10.2165/00019053-200119030-00002 · Cited by 58 · see citing works
Holmes, W. F., MacGregor, E. A., & Dodick, D. (2001) · Neurology · doi:10.1212/wnl.56.suppl_1.s13 · Cited by 54 · see citing works
Global perspectives on the burden of episodic and chronic migraine
Buse, D. C., & Lipton, R. B. (2013) · Cephalalgia · doi:10.1177/0333102413477736 · Cited by 51 · see citing works
Impact of migraine and migraine therapy on productivity and quality of life.
Solomon, G. D., & Santanello, N. C. (2000) · PubMed · Cited by 47 · see citing works
The Economic and Social Impact of Migraine
Stewart, W. F., & Lipton, R. B. (2008) · European Neurology · doi:10.1159/000119527 · Cited by 45 · see citing works
Disability in chronic daily headache: state of the art and future directions
D’Amico, D., Grazzi, L., Usai, S., Raggi, A., Leonardi, M., & Bussone, G. (2011) · Neurological Sciences · doi:10.1007/s10072-011-0552-1 · Cited by 35 · see citing works
Valproate-induced hyperammonemic encephalopathy in the presence of topiramate
Solomon, G. E., Hamer, H. M., Knake, S., et al. (2000) · Neurology · doi:10.1212/wnl.55.4.606 · Cited by 35 · see citing works
GBD 2016: still no improvement in the burden of migraine
Reuter, U. (2018) · The Lancet Neurology · doi:10.1016/s1474-4422(18)30360-0 · Cited by 31 · see citing works
Burden of migraine: what should we say more?
Leonardi, M. (2015) · Neurological Sciences · doi:10.1007/s10072-015-2188-z · Cited by 30 · see citing works
Headache-related disability in the management of migraine
Lipton, R. B., Stewart, W. F., & Goadsby, P. J. (2001) · Neurology · doi:10.1212/wnl.56.suppl_1.s1 · Cited by 24 · see citing works
The Impact of Migraine on the Health and Well-Being of Women
Diamond, M. L. (2007) · Journal of Women s Health · doi:10.1089/jwh.2007.0388 · Cited by 23 · see citing works
Torres‐Ferrús, M., Alpuente, A., & Pozo‐Rosich, P. (2019) · Current Opinion in Neurology · doi:10.1097/wco.0000000000000689 · Cited by 22 · see citing works
Self-citationMeasuring disability and quality of life in migraine.
Dahlöf, C. G. H. (2003) · PubMed · Cited by 18 · see citing works
Migraine – the forgotten epidemic: development of the EHF/WHA Rome Declaration on Migraine
Diener, H. C., Steiner, T., & Tepper, S. J. (2006) · The Journal of Headache and Pain · doi:10.1007/s10194-006-0349-4 · Cited by 15 · see citing works
Self-citationSteiner, T. (2000) · PubMed · Cited by 15 · see citing works
Self-citationLeonardi, M. (2003) · The Journal of Headache and Pain · doi:10.1007/s101940300002 · Cited by 10 · see citing works
Migraine disability complicated by medication overuse
Martelletti, P. (2018) · European Journal of Neurology · doi:10.1111/ene.13736 · Cited by 9 · see citing works
Stress, Personality, and Headache: Searching New Territories
Andrasik, F. J. (1999) · Cephalalgia · doi:10.1111/j.1468-2982.1999.1906541-2.x · Cited by 5 · see citing works
Headache, Functional Impact and Environment
Steiner, T. J., & Stovner, L. J. (2019) · Headache · doi:10.1007/978-3-030-24728-7_11 · Cited by 5 · see citing works
Self-citationPatel, N., Barnhart, R., Konkol, P., Varda, J., Nelson, R., & Smith, T. (2020) · Drugs & Therapy Perspectives · doi:10.1007/s40267-020-00801-2 · Cited by 5 · see citing works
Burden of migraine and impact of emerging therapies on managed care.
Rich, S. J. (2019) · PubMed · Cited by 3 · see citing works
Flagged first, then by citations
Research works printed but not linked: 2
- [51]Willheim K. The societal impact of migraine. Acta Clin Croat 1997; 36: 20–23.
- [52]Andrasik F. Assessing migraine disability. Cephalalgia 1999; 19: 74.
Cited by
Sorted by citations
Ulrich, S., Gantenbein, A. R., Zuber, V., Von Wyl, A., Kowatsch, T., & Künzli, H. (2024) · Journal of Medical Internet Research · doi:10.2196/50132 · Cited by 36 · see citing works
“The physical, social, and mental burden of headaches, defined as the summation of all negative consequences [3], is substantial.”
Self-citation
- Authors
- Steiner, T. J., Terwindt, G. M., Katsarava, Z., Pozo-Rosich, P., Gantenbein, A. R., Roche, S. L., Dell’Agnello, G., & Tassorelli, C.
- Affiliations
- Norwegian University of Science and Technology (NO)
- Leiden University Medical Center (NL)
- Georgian National Museum (GE)
- Headache Unit, Neurology Department, Vall d'Hebron University Hospital, Barcelona, Spain
- University Hospital Zurich (CH)
- Eli Lilly (Ireland) (IE)
- Eli Lilly (Italy) (IT)
- University of Pavia (IT)
- Corresponding author
- Dell’Agnello, Grazia
- ORCID
- Venue
- Cephalalgia
- Publisher
- SAGE Publications
- Published
- 2022-07-05
- Volume
- 42
- Issue
- 13
- Pages
- 1387-1396
- ISSN
- 0333-1024 (ISSN-L)
- 1468-2982
- PMC
- PMC9638708
- OpenAlex
- W4283825975
- Cited by
- 39
- References
- 60
- Citations by year
- 2026: 6 · 2025: 13 · 2024: 14 · 2023: 6
- FWCI
- 5.37
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Cephalalgia (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- Leiden Repository (Leiden University) (submittedVersion)
- Dipòsit Digital de Documents de la UAB (Universitat Autònoma de Barcelona) (submittedVersion, cc-by-nc)
- Spiral (Imperial College London) (submittedVersion, cc-by)
- Funders
- Eli Lilly and Company
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Migraine and Headache Studies
- Social Sciences › Sociology and Political Science › Delphi Technique in Research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Keywords
- migraine, definitions, terminology, Delphi consensus, health-related quality of life, disability
- MeSH terms
- Delphi Technique, Humans, Migraine Disorders, Quality of Life, Consensus
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